Wednesday, December 28, 2016

The celebrations continue......

So. That's it then. Christmas is done! All that remains are cold chunks of beef, crackers and what seems to be, a cheese shop in my fridge. We are all happily living off festive leftovers. I can hear the Good Man crunching his way through doritoes. Our normal three meals a day with shit loads of fruit diet, has gone out the window, and been replaced by a dead slack cavalier approach. Cake for breakfast? Why not? I convince myself that this is good, in a waste not want not stylee. The Little Man wants jelly, and I fancy a trifle.....not with sherry in mind you. Call me unsophisticated. But I am not a fan of alcohol in food. Alcohol in a glass. Food on a plate. And I don't think I'll ever have an appreciation for sherry, as it's disgusting.

As I was saying......Christmas is done. But what isn't done, is my birthday. My yearly celebration is wedged between Christmas and The New year. Some people loathe having their birthday so close to Christmas, but not me. I quite like it. We have people coming and going throughout the day and I'm really looking forward to it! Just don't enquire about my age. Ok?

Today is one of those days when I just can't get going. I'm still in my pit, with a hot chocolate and Badger stretched out behind me. I'm sure I'm the envy of most working people, with my lie ins and pj wearing lazy days. Although I'm sure no one envies the brain disease part of me. Zombies would not want my manky brain. But it's because of my manky brain that I've been able to afford the time to have the little man, and stay home with him. To be the one who's always here, not dashing about trying to do several things at once.

I remember an ms friend of mine that used to tell me to look for the gift. At the time I was still driving, swimming, yoga ing, body balancing and high heel wearing, and I couldn't see any gifts. I had relapsing remitting MS, and life for the most part was uninterrupted. I had blips where ms would rise up and bite me on the arse. And then, bit by bit, the life I had, that I thought made me ME, was eroded. First to go was the heels. No bother as I love converse too. And then the rest got chipped away, bit by bit. And I could only seem to think of myself in terms of 'I used to....' Well, that's like beating yourself over the head with a shitty stick. It took me a while to realise, that I'll always have the 'used to' part of me. That I could set it to one side, as I went about developing the new me. It took a while, but I'm now ok with how I am. Don't get me wrong, I do have the odd shit fit about it. I'm not a saint. But life is good. There are things I have ms to thank for......

And I never thought l'd say that. 

Thursday, December 22, 2016

Eat your weight in mince pies......

Well, today was non stop excitement. As we were meeting friends at a pub, we bundled ourselves into coats and the car. Transferring from the wheelchair to the car is a bit of a mission, as my legs seem to be giving up on the only job description they have, and are required to the bulk of my body as I stand for literally 5 seconds to twist and drop onto the car seat.

I've got this returner thing from physio people. It has a base I stand on, then I pull myself upright to standing. Which I can do, and Jesus wept! It feels so good to be standing up, and this never surprises me. Although, when I first started using it, The Little Man was surprised,
'Mummy!!? You're standing??' And as I haven't been a standing Mummy since he was tiny, it would have been a surprise. I laughed and said, 'Yes! Yes I am!' Honestly? My voice was a happy voice, and I was happy, but I could've cried, both sad and happy tears. I need to be using it to help strengthen my thighs.

So anyway back to the pub and meeting the friends that didn't turn up...we got the wrong's tomorrow. So back we'll go, it's a superb pub, so no hardship. Except to our waist lines as the food is quite spectacular. Still, it is Christmas, and we all are expected to eat the equivalent of our body weight in festive food. AKA pizza. See my Festive List blogpost....

So now it's the next day and meeting friends take 2. So far, I'm still in my pit with burning eyeballs. BUT, I have thought about what to wear, done a Facebook quiz had breakfast AND my advent chocolate. I just can't shift. Physically and mentally. Oh and I just remembered physio is here in a min....slight panic! Hopefully that will wake me up and I'm sure she won't care about seeing me in my pjs.

Twenty minutes later and physio done, so it's time to get ready and head out for a more successful meet up with friends. The pub was a lot busier today, so we squeezed round a table, and exchanged our gifts. No matter how long we talk for, there's always more to say and things forgotten to say.

My husband has taken it upon himself, to be the seasonal hunter/gatherer. Right now he can be found stalking his prey in Sainsbury's. And I can be relied upon to tackle a non stop avalanche of pine neddles. The tree is not near a radiator, and it's watered daily, but still continues to shed almighty amounts of fecking pin needles. I just found one on my pillow! WTF??

A friend that I've know for AGES was coming over tomorrow, but the poor girl has Norovirus. I had that a few years ago now, but I still shudder at the thought. I felt as though I was left an inside out shell of a person. And so attractive. The joy of winter bugs.

On that note, I'll love you and leave you.

Sunday, December 18, 2016

What comes first? The fridge/freezer or car? You can keep your chicken and eggs..I've nowhere to store them!!

Today is not the best day I've had. Well, it was part lush, but always with an undercurrent of MEH! In my extended family, we do secret Santa. And today is the day! But am I there? No....and have I been in a coma for most of the day? Yes I bloody well have! The person that bought for me, got the present to me, and it hit the spot! Someone that knows me well enough to know that the biggest ever chocolate bar, a large and beautiful yankee candle, and lush smelling body wash, and one of those puffy things, and it all hit the spot! So, missing out being there = meh! But facetiming and saying hi to the 19 family members = fantastic!! As does opening my present......thank you! Xx

I also answered the door earlier, to a food delivery, that my sister arranged to have sent to that was a Billy Bonus too! So whilst I'm feeling a bit grumpy about missing out, my family have still included me in their day's celebration and that scores highly on the happiness chart. My sister has a signature dish of a beautiful crunchy/chewy pavlova, and piled high with cream and raspberries; and as I couldn't be there to help devour it, there was a raspberry pavlova in the food delivery. I'm sure it won't be as good as my sisters, but sending and knowing my favourite stuff, scores very highly! Oh and there was a Dr Pepper too.
She could have got me a new and bigger fridge freezer though. It was a struggle to get it all in, and as I was placing/ramming things in, ice was  groaning and chipping. De-icing the freezer was probably not my sister's intention. I've been thinking for a while about a new and bigger fridge freezer......but as we need a new car too, I think I'd best forget it.

Still, Santa might deliver..........??.....


Tuesday, December 13, 2016

A festive list......

It's Friday, and weekend plans are looming........and wishing to carry out those plans, means I have to ignore the monster that is MS, always looming large in my life, whilst biting my back and snapping at my heels. I wish I could give it the slip, and it give me a break.
The two boys are bathed and ready for a story and then bed. Chrissie Hynde is doing her best to put some festive cheer into a song, and failing, as I tip myself into bed.

Weekend plan #1= pub lunch with friends. The festive lunch was ignored by each and every one of us, as we ordered pizzas. Three of us complained about being fatty fat fats, and then ordered pudding. One of us is a barely there person, so she can eat all the pudding she likes. Annoyingly.

Tomorrow the Christmas tree is going up. Apparently, it's already been bought, and is on the drive. The boys are dead excited about decorating the tree. The Good Man, less so, as he'll be scrabbling about in the loft for the decorations before we can start. Then it's over to daughter number threes for a Christmas meet up with my ex husbands family. I haven't seen them in ages. So long in fact, they haven't seen me in a wheelchair. So, that'll be odd. From my side, and theirs. Did you know that only about 8% of people with MS use a wheelchair? That's not a minority to envy.  Well, saying/typing that.......I hate being in a wheelchair, but I love what it enables me to do. And bingo wings will not develop whilst I'm self propelling. Every cloud n all that........

And then the Slightly Bigger Little Man goes home. But he is with us for four days over Christmas And The Little Man begins the wind down at school. So I'd better get on and help him do his cards. Another job for tomorrow.

Christmas CD back on.
Decorate tree.
Write the Little Man's cards.
Watch The Snowman.
See people.
Eat some quality crap.

So now it's Tuesday. Apart from The Snowman the list is sorted. I've also had a cut and colour, so at least my hair looks healthy, even if my face doesn't. Anyhoo, I doubt I'll write before Christmas, so Merry Christmas to you all! Xx

Tuesday, December 6, 2016

Maggots and faggots.

For the last few days I've been feeling awful. So awful I can't really explain how I feel. But today, on more than one occasion, I managed to stop my husband in his tracks.......he then said the beautiful words that all girls long to hear......'Babe? You look wrecked.' And I swear that my eyes are working independently of each other. So this makes me feel heavenly......especially as I am also changing from one set of pjs into another clean, fresh pair. Clean and fresh I am not, but at least my pyjamas are. My hair has also formed a matted ball at the back of my head. And can I find my hairbrush? No. That's enough of me and my beauty tips......

Tomorrow I am planning on sorting the last bit of Christmas shopping. The Good Man is tricky....all his heart desires is a fire pit. And Amazon vouchers.......I think he doesn't trust my present buying. Voucher buying, the most romantic of gifts....for my one true love, is not happening. Fire pit it is then. And all my heart desires is a silver bangle I've seen. And yes, we both seem to have reached that age where we don't need ANYTHING. We are bloody lucky. Maybe I should ask for a hairbrush? The one I've lost is bright pink too, HOW has that gone missing?

The Little Man is gearing up for his schools nativity play thing. There are two performances, and he is starring as a shepherd. A non speaking part, but I bet he'll be the best shepherd I've ever seen.
Then his big brother is here for the weekend, and I think we'll get the tree. The boys will decorate it, and when they're in bed, I'll redo it, to space the decorations out. Otherwise the lower branches will be heavy with baubles, and bare upper branches.

A few people have been ringing/texting to see when we are about for a meet up. And people are what make or break a good time......Christmas or not. I found my Christmas was presumed lost until the other day. So I'll but that on and sing about scumbags maggots and cheap lousy faggots, and crack open the Baileys. Joyeux Noel!

Sunday, December 4, 2016

It's 11pm here, and all is quiet. The Good Man took The Little Man to his school friends today, to help him decorate their Christmas tree. Unfortunately I couldn't go, as MS was being a bell end. I like to get a real tree, about a week before Christmas. And then two weeks is enough for me, to have a tree in my lounge. Having a tree in your house = lovely, but it's a bit odd, if you think about it. I like the minimal approach to Christmas decorations.....less is more n all that. And tinsel gets a big fat no from me. This may change over time, that is if the little man has his way.......he is taking a firm view, that a pink tree is the way to go. Pink trees are not prolific in nature, and seeing that the pink trees are made of's not happening. In fact, my hands feel a little sweaty at the thought..... So a compromise......The Little Man having a mini mini pink tree in his bedroom. And I'm getting some pale pink baubles for the real tree. And d'you know what? I'm getting a bit excited now......I wrap lights and fat fake ivy around the banisters, have a willow twig reindeer outside by the front door, put stockings up, (not mine) and I'm done. Then Christmas Eve sees Santa leave snowy footprints up the statues, to leave treats outside bedroom doors. Again, it's a bit weird to have a strange man go in your bedroom, my girls didn't like to think of a strange man creeping in to their bedroom. And to be honest I saw their point. So I would make up gift bags of sweets, and a mini can of drink, to leave outside their bedroom door. And yes, Santa and Rudolph were thanked with a carrot and a mince pie.

I just have The Good Man and my niece to get for, then I'm done present wise. Anyhoo, that's enough Christmas chit chat. Actually, no it's not. The wrapping extravaganser (? spelling??) will take a bit of time. I don't mind this actually, in fact I quite enjoy it! Back during my first marriage, I'd go and wrap all of my husbands presents. One year they bought me the sellotape dispenser that you wore on the back of your hand. It was the first time I'd ever used one and it was bloody marvellous! Thank you Betty. Thank you Tom! (Blowing a kiss heavenwards).

One of my girls is having a get together with her Dads family, and she has asked me to go. They were my family once upon a time too, and it would be nice to go and see everyone. They'll be seeing the new improved (?) wheelchair me, and whilst they won't give a shit, I will. And I won't too. BUT, I am having my hair done the day shiny new hair will hopefully dazzle them.

All my girls will be there too (I think) and so will my grandson and my granddaughter. Fuck! Just typing that makes me feel antiquated. But they're beautiful, and cheeky, so that helps. Right! So tomorrow, we need to gather our decorations, and remind ourselves of what we have. Oooh, I think I'll put a little tree by the front door too. My minimalist decorating takes planning you know ;)

Speak soon Xx

Sunday, November 27, 2016

It's Sunday here. The Little Man is playing at his friends. The Good Man is taking his boy home, which all in all, takes about two hours. And I am sitting on my arse again. All I had to do was stay in my wheelchair. Could I manage that? No. Turns out my transferring is not so hot. I'd made myself a drink, and managed to bring it back to the bedroom, without spillage. Ate a pear. Ate a satsuma. Binned the pith, skin and cores. Then fatigue hit me, like a smack in the face with a tennis racquet. So I decided to go back to bed. Good idea. Turns out I was asking too much, and despite determination, I slumped to the floor. Which gave me the opportunity to respond to the WHY? and HOW? questions about this situation. The WHY? is answered quite simply. BASTARD MS that's why. It means that even with my feet flat on the floor, I can't push myself back. So looking and acting like a melting candle, I end up on the floor. And I'm dead chuffed I somehow managed to avoid scrapping my spine against the bed. Whoo hoo! Go me!
Yep, so I'm siting on a hard floor (great for the wheelchair, but rubbish for my arse.)It's cold and it's dark. And that applies to the room, but also how I feel about MS, and also how I feel about my body. My body is an arsehole, that lets me down. Just because I found transferring easy yesterday, does NOT mean I can do it today. And tomorrow, I'll do it perfectly. Maybe. MAKE YOUR FUCKING MIND UP MS! IM FED UP OF NOT KNOWING WHERE I STAND WITH YOU(so to speak)
So the Good Man will get some hoist practice in, when he returns.
I was going to get dressed, and just generally try and look like I'd polished the turd, to a suitable standard. But no. Oh well, never mind. I haven't hurt myself, I'm just cold (despite a blanket) oooh, I've just realised I can reach my bobble hat AND it matches the blanket! Uh oh....the bobble hat is  just out of reach. That's annoying. Never mind. I'll hook it with a coat hanger. TAA DAA!! Success! I can understand how that bloke cut his arm off in that film, 127 hours. If you haven't seen it, please watch it.
And I need to face the FACT that, despite being a grown up, I cannot be left alone. Well, that's what I'll be told. And I agree. Partly. Everyone needs time on their own. I enjoy my own company. Mostly. But I admit that sometimes I'm a bit of a twat. MS is an unreasonable, life stealing C**T. You try living with it. No? Please? Cos I'm done. I'm not ready to check in to Dignitas just yet, but come on!! Where's the fun in this?? I can't even put my own pants on FFS! I remember the days of searching, trying and buying some nice underwear as The Good Man and I were going away and you know......
 Sorry girls........? But anyway.....the cavalry arrived at the same ish time. Girlie number four was attempting to get me in the hoist. She was calm, careful and methodical. Between us we were getting there. Then the Good Man came home with the Little Man, and an impromptu training session began. And I was back in a warm bed in no time. With a flapjack from The little Man. And with a numb bum. But no bobble hat.

My family is pretty awesome. You are brilliant collectively, and individually, and I thank you for being there, and helping me to cope with all MS chucks at me/us. 

Wednesday, November 23, 2016

Obama=Yes Trump=No

So, 2.30am here, and obviously I'm not asleep. I've just been for a wee AGAIN, only this time, I had to wake The Good Man, and ask him to accompany me, like the grown up I am. The reason for needing his help, was because my legs are failing me. They failed me a long time time ago, with regards to walking but now they're failing me when it comes to the twenty seconds worth of standing, needed for transferring. My arms, and hands, keen to join in, keep dropping things. And it's all a bit shit. However, my friend gave me some jewellery that she needs fixing, so my hands will get a bit of a workout......silver v's pliers. My silversmithing kit needs an airing, and I'm actually looking forward to sorting her necklace. First things first though. My tool box is either a,in the loft (I pity the person who decided to put it there......DO NOT PUT MY THINGS OUT OF MY REACH. Or b, it's in the shed. Newly laid turf and a wheelchair go together like mustard and ice cream. The grass is safe though, as I can't get on it, or to the shed. AGAIN, DO NOT PUT MY THINGS OUT OF MY REACH. The Good Man is just that, a good man, so I know he would not have meant to upset me, but AAARRRRGGGHH, and deep cleansing breath. My tool box will have to live under the bed. I will have to make room somehow......which is probably why it ended up in the shed/loft in the first place.

This evening I watched Barrack Obama giving out awards and all I could think was how do you go from Obama to Trump?? That is not a straight line connecting those dots. So what I reckon is that Trump will realise quite quickly that he's out of his depth, and not do a full term, OR he'll get assassinated. Whatever, he's going to undo an awful lot of good work by Obama. TWAT. 

All The Little Man wants for Christmas is a Batman helicopter boat. I don't know if this exists or not or if it's just a combination of things that he feels Batman would appreciate. Thankfully, I have time to explore all things Batman. I shall report back my findings. His big sister got so frustrated with me one yeaone year. All she wanted was a superpamplayban. And I didn't understand what she was saying, which didn't help her frustration. Or mine. Several weeks later, with the help of a tv advert, I realised she was saying Super Pound Play Van. Obviously. And TAA DAA! I got the last one in Toys R Us, and I felt victorious and triumphant, and basically so fucking happy!! Happy Christmas to me!! I'm so sorry. I didn't mean to use the C word. Not yet anyway.

My husband just returned from the shop, with two advent calendars. I was alerted that he'd returned, when my 19 year old daughter was having a strop. 'WHY HAVENT I GOT ONE? I WANT ONE!'
Yes but you're 19. But thinking about it, I'D like one. So I'll be going shopping for advent calendars then.....

Sunday, November 20, 2016

Shoe box happiness......and spine scraping sadness.

It's that time of year, where primary school children are asked if they could fill a shoe box with toys and personal care items. These boxes are then collected, and distributed to children, in need of such things. Where these children are, I don't know. They could be home or abroad, I don't know, and I don't care. A child in need is a child in need, wherever they may be. I love putting a shoe box gift together. This year, I'll be doing it for a boy the same age as the little man. He'll come with me to the shops, and help choose items to go in the box. The learning to give lesson, and understanding that every one's life/home is not the same as yours, is invaluable. There's a great deal of luck involved, in how your life unfolds.

So, the next day......the little man and I, go to Sainsbury's, with daughter number 3. And it turned out that the little man was extremely tired. He had a bit of a melt down......seeing bits and bobs that he loved, go in the trolley, but they weren't for him? WHAT? We still don't have a shoe box either. Here's hoping I can get one tomorrow.......and that it doesn't start another melt down.
Thinking about it, the invaluable lesson can wait a year or two.......and just start with drip feeds.
Shoe box found, wrapped, no more melt downs. Mission complete. Well nearly. We just need to drop it off down the road, at the starting point of it's journey.

Earlier today, I did one of my 'specials.' Y'know...where I end up on my arse, on the floor. It was another slow motion slump. I was aiming for the wheelchair. Missed. Slumped. On my way to the floor, I scraped a big chunk of my spine over the wooden side of the bed. And you know how I said a couple of blogs ago, that slumping to the floor, and being on my own, were connected? Well, yep, you guessed it, I was on my own. Luckily, this time, my phone was in reach. I called The Good Man, and he was able to come home. He was nearby, and able to come home within 15 minutes or so. Why does this happen when I'm in the house on my own?? It's not like I need help transferring. Well not 80-90% of the time.

The rain is really going for it tonight....plump rain drops beat the skylight above my head like tiny angry fists. And not for the first time, I feel more than grateful for my home. 

Tuesday, November 15, 2016

First off, let me apologise for not writing for bloody ages. I would like to credit my absence, to something amazing, but no. I've just been slack. My youngest daughter was brutal with me today, telling me I do nothing with my life, and whilst her delivery needs work, she may have had a point. So, I can't go back to the things I loved, so I need to move forward, with something new. The only thing I can think of that stirs a desire in me to learn, is sign language. I've wanted to learn this for ages. There used to be a beautiful old building near where I used to live called The Deaf Centre. I used to walk past it regularly. Until one day, it was razed to the ground, and replaced by flats. So that was an opportunity lost. Fast forward a few years, actually, LOADS of years, and I'm at a local park, with the good man, the little man and the dog. A family passes us by, and the little girl in the group, signs 'dog'. I was so bloody pleased that I knew what she was signing, and being a great conversationalist, I signed back, 'Good. Yes. Dog.' I was beaming my best smile, and hoping I didn't come across as odd......but the little girl looked happy with my effort.
So at the moment, I know dog, good, thank you and bullshit. I used to know the names of all the family members, like sister, brother, auntie and so on, but I fear they got swept away, on a tide of grey matter, as MS dissolved parts of my brain. You know, this whole ms thing is odd. For example, I remember clearly the happenings pre MS, but since MS it's clear that MS is busy digging pot holes in my brain, ready and waiting to usher through, any thought that I may wish to re-visit. But tough tits, say goodbye to your memories.
So my conversation skills are slightly stunted, so I dunno how I'll remember what I'll learn, but I won't know until I try. I'm hoping the physical movement aspect, will add another layer, making it harder to forget. Well, here's hoping!
Watch this space....

Friday, October 21, 2016

Pros and cons.

Today I found myself on my arse. Again. I was alone in the house. Again. Being alone and on my arse seem to be connected. As some point of being alone, I think I must fling myself about, and mis judge the landing part of transferring. My spatial awareness must be off, or maybe I should wear my glasses. And when The Good Man  returned (looking lush with his haircut) I got to experience how his hoist homework, was paying off. Both he and I were more comfortable. And it turns out the physio, the expert, had got it all about face. Sometimes it pays off to be your own expert. So, using it correctly was a bloody breeze! And  I declare it a success. Anyway, I had taken the opportunity, whilst on my arse, to clear the space under the bed of my shoes, as our new bed has arrived.  And my daughter, queen of flat pack, a skill she inherited from me, is coming over tomorrow to tackle/assemble it.

And I had completely forgotten that I'm out on Monday with friends. Luckily, I was reminded by one of them. Although, my no cake stance was rejected.... I'm going to have to be strong.....hhmmm, we'll see how that pans out.....

Also, my new chair will be accompanying me. I picked it up yesterday and it's a bit of a beast.

•It's so damn comfy.
•It folds down really well.
•The self propelling bit has a rubbery easy grip surface, even in the rain, and won't get cold like the metal one on my old chair.
•It has a finger guard.
•The seat cover is removable, washable AND tumble dryable.
•It has an adjustable back.
•Accepting it put me in the system.
•The arm rests are like a thick spongy rubber that won't get cracks or holes.
•The brakes can easily be flipped out the way, so don't stab you in the leg, when transferring.
•It has Anti tip bars!
•It was FREE!!

•It's so wide, and that makes self propelling difficult.
•The fingerguard is plastic, grey and ugly.
•Additional seat covers are £75. £75!!!
•The back can't be adjusted by me, when I'm in the wheelchair.
•The turning circle is huge.
•It really struggles on carpet.
•I had no say about it. Get what you're given kind of thing.
•The arm rests are too low, and can only be adjusted by someone not in the chair. i.e. Not me.
•As there are things about it, that needs someone else to help me adjust, my independence has taken a bit of a clip on the wings. UGH and BAH etc

So, Pros V's Cons are pretty even....part love part hate......
What to do? If I keep it, I'm in the system. But do I want to be in the system? Dunno. I know it makes sense but fuck, my home, my precious sanctuary is under threat, as it houses 1 scooter, 1 hoist and 2 wheelchairs. You might not think that's much to have in your house, but now think where you'd put them in your house.

Today's list of thanks goes to family, friends, the NHS and YouTube.

Enjoy your weekend.

Thursday, October 20, 2016

Today I went with my daughter, to see her try on wedding dresses. Luckily, she had already been, with her twin, and so she knew which dress she already loved. And I say luckily, as I still shudder at the memory of shopping with them both, for all things prom. The vast shopping centre in Sheffield, Meadowhall,  saw my inevitable breakdown, as we went from one shop to another X one hundred, and back to the first shop to buy the dresses that they both tried on first. The shopping centre is now fondly known as Meadowhell.

So, back to my daughter. Her favourite dress was tried on, and she looked lovely, but unsure. So she tried on another two, also lovely, but not really her. Back to her favourite, and this time, unsure was replaced with confident. And nothing says BEAUTIFUL like confidence.*

There was a dress there that was just under FOUR THOUSAND POUNDS. I mean, you're asking for a slap if you'd seriously consider spending that much, on a dress, for one day. And if I were your dress buying companion, I'd gladly dispense the slap. 

And how the hell have I got a daughter that's old enough to be  getting married? Dunno. And also, what is it with the mother of the bride crying? If she's happy, I'm happy. Saying that though, wedding dress shopping = no tears. The day = no promises. But then, my youngest daughter called me a frosty bitch the other day. I can't remember what programme we were watching, but I kept my normal TV watching face, whilst she was a mess. I can't make promises either way about how it will go on the day. But I will be wearing make up, so that means unless I want it to all slide down my face, I'd best not. Especially as tears are generally accompanied by snot. 

Tomorrow I am picking up a new wheelchair. The situation surrounding this wheelchair to my first, is so different. First time round, despite my very desperate need, I was told I would have to wait MONTHS to just get assessed. To be fair, I did get a phone call from someone about it all. I was asked if I could sit up unaided. When I said yes, I was informed that other people were more urgent, and that I'd have to wait. AGES! I understand that there will need to be a pecking order of desperation. But for every single person needing a wheelchair, it's pretty desperate. So, no choice but to get my own then. I found a wheelchair place, put my order in, and it was built, and my legs for MONTHS, before I even got a call from my local wheelchair services. Moved one county over, and someone, a physio I think, told me I need a new chair. I was sent to wheelchair services pretty much straight away, and it's been weeks rather than months waiting. I'm quite excited actually. Especially as it will have antitip bars. So no more cracking my head on the pavement, or in the garden or pub car park. Can't say I'll miss that......ooh, I wonder what colour it is??

*Confidence = beautiful. Cocky = ugly. Try not to get them mixed up.
 That might also earn you a slap. 

Saturday, October 15, 2016

Yesterday was one of those days......started perfectly.....breakfast of thick pancakes, with a vanilla flavoured dollop of something, and red berries and blueberries. And of course, a cuppa. And then the hair pulling distress started......we need a new bed, and we've known this for a month or two, but it took until tonight to get it sorted. Still, sorted it is, and it arrives on Friday. I'd found a bed that I really liked, but The Good Man was having none of it, as he thought the legs were too spindly. I said they weren't. But he was adament that they'd break, in a scenario that also involved him breaking a leg. I thought he was being a drama queen. He started grunting about the whole thing. And it's taken until now for me to remember that, a few years ago, he had earned the name 'bed breaker' This was due to a visit to a show home where he dropped, rather than sat, on a bed, and it collapsed. As did I, pissing myself laughing at his misfortune. So he may have had a point. But don't tell him I said that.

So come delivery day,  I think I'll take to my bed, wrapped in my pink alpaca blanket. That sounds confusing. I doubt the alpaca was pink. But the blanket is. It's so incredibly soft and light. Seeing it plonked on the bed, daughter number 4 was concerned that the Good Man had bought a pink poncho. I don't have much to say about that, except that thank f**k, she was wrong. She also proved to be very useful, as when she got in, I was suspended in mid air. I hate having a hoist, but today, even more so. I'd collapsed on the bedroom floor in a slow melting stylee, in perhaps the most awkward spot. I was in the house on my own, waiting for the Good Man to return from Birmingham, and collecting the Little Man from his friends. My legs were all tangled like a Betty Spajhetti, the floor was cold and hard, and my mood was not joyful. Back to me in the hoist.....I'm off the floor, suspended in mid air, trying not to lose my shit. The sling was bunched up and cutting in to me. I expected to hit the floor at any minute. Now, whilst I can't laugh about it, the feelings of shame have subsided. Actually, that's bo****ks. I do feel shame in how my body has let me down. But anyway, the Good Man needs to get some hoist practice in, so please make yourself known, if you're willing to be a levitating guinea pig.

And also step forward if you can help dismantle a bed, and put another one up.
The sounds of my house = daughter hoovering. Dog barking to announce arrival of friends.
Washing machine spinning. 

Monday, October 10, 2016

Since we last spoke, my husband had a weekend away with my brothers. Their weekend consisted of food, alcohol, hot chocolate and hills. Whilst The Good Man was absent, my oldest friend came to stay with The Little Man and I, by oldest, I mean the person that I've known for ages, not that she has clocked up some years. Another school friend came over on Saturday night, bearing a bag of veg that she'd grown. So our Saturday night consisted of wine, memories, chocolate and veg. Wild. I shouldn't be able write actually, as every time I heard the C word, or said it (Christmas, not c***) I shot myself in the head. With the gun that I don't possess, but you get my gist.

I can't remember if I've said about the new wheelchair that I'm getting? It's being provided by my local wheelchair services FOR FREE! It should be nearly ready by now, and I'm excited to meet it. Wheels, in my world, are the new legs, so 10/10 to whoever invented the wheel. The new one will have a lot to live up to......light, micro turning circle, collapses small enough to fit in the boot. A list of three demands should be do-able. Well, I hope so.

QUOTE OF THE WEEK goes to daughter number four.....'I hate adulting'

She's got a point.....being an adult isn't all it's cracked up to be, when you're a daydreaming child. All you think about as a child are the possibilities, rather than the how. And I'm NOT going to shit on their dreams. It was not a dream of mine to have a brand new sparkly wheelchair. But it is now.
AND happy turfing dreams, start tomorrow. EEEeeeeeeee!! So that'll be a scintillating conversation to have with my veg growing friend. Her lumpy bumpy carrots tasted awesome!

Thursday, October 6, 2016

All lives matter.

  • Tonight, I watched a programme, that made me cry. And I have been called stone faced....I don't cry easily. Anyway, the programme was presented by actor Sally Philips (Smack the Pony, Miranda) and she was exploring the way in which screening tests are presented to expectant Mums, and the language used. And even calling them 'screening' tests hints at the leading language used. It's also devisive......your baby is perfect. Or it's not. According to whom? And that's just the beginning of a lifetime of division......

Sally Philips has a ten year old son with Downs Syndrome, and as more and more people abort babies with Downs, what message will he get from that? Not a good one.

In Iceland, the termination rate is 100% for known Downs babies. The programme featured a clip of Sally talking to a young lady, with Downs. She could speak English, as well as Icelandic. But how do you go about living in a country, where people have deemed themselves unfit to raise a child with Downs, or have decided that they don't want a child with Downs. I'm not suggesting that it's a decision that's made easily. Far from it. It also featured Karen Gaffney, who has Downs, giving a TED Talk. She was incredible and I plan to watch it all later. Now, I would shit a brick giving a TED talk, but not this young lady. She was so calm, and looked so comfortable. Her talk was called All Lives Matter. And I've pinched that for this blog. Thank you Karen.

This got me the future, will other diseases or syndromes be identified? Or a risk assessment made about diseases/syndromes occurring? Like cancer or Multiple Sclerosis for example. Now, I wouldn't wish MS on anyone, but would I abort a baby that had that in their future? No. I'd had four of my children pre diagnosis. One or all of them may develop MS. And I had number five, after my diagnosis. I was 39, so my risk factor had increased for a child less than perfect. But I am less than perfect too, so I decided that I'd take and love, whatever came my way.

*I don't know how I made that first paragraph move in a bit, with the black dot. And I don't know how to undo it either. So, sorry about that. I'll try and get a lesson later. 

Monday, September 26, 2016

Errr....was that it then?

So is that it then? Summer's over? It's gone all wet and cold. And I'm not best pleased. Especially as I cracked out my boots, only to discover I've lost flexibility in my feet. Not a problem when you're wearing flip flops or converse, as I have been (I was going to say 'all summer' but as that equates to two weeks, I won't.)Flip flops and converse don't require anything of your feet. And this is something  I hadn't thought of, well I did when a friend of mine who knows about these things, told me to keep my ankles flexible. And I did. I'd stand with the balls of my feet on the edge of a step, and drop my heels down. Then we moved, and I was in a wheelchair more and more, and I just forgot. But I'm going to bloody well start again! I have three pairs of boots that I was really looking forward to being re-united with again, so I better try to get some flexibility back. Either that, or it's flip flops though the winter. No thanks.

So anyway, that was a gift from ms that I could do without, but hopefully one that can be reversed. My calf muscles will have been shortened, due to lack of use, through not walking. So I just best make them longer then. The whole not walking thing is a pile of shyte. But I think I said that last time. Yep, well, it's still shyte, with a nice fat cherry (representing the boots) on top.

Plus, I can't really be buying boots, when I've got a wedding dress to buy. Not for me, obviously, I have The Good Man, but for one of the girls. But, then again, maybe I will get the boots, to go with my leather jacket, that she's banned me from wearing to the wedding. She's quite petite, I'm sure we could cobble together a dress out of something. My beautiful white tablecloth perhaps?

Anyway, I've got my dress already. Mother of the bride n all that. And no, I won't be wearing a hat. Anyway, my's coral, and was in the sale. Not one, but two jackpots hit. I fell in love with it, so a purchase was made. Ching Ching. Another jackpot hit. The holy grail of clothing buying hit. In the ching! favourite ching! Loved it....CA CHING!!

I've got the grand total of nada planned for this week, until I hit Saturday. Then it's a pub lunch with two friends. One of the hard core few, and his girlfriend. So let's hope I've sorted my calf muscles enough, to wear a pair of my lovely lovely boots. (Falling in love with them even more, now I know I can't wear them!) Still, five days of stretches to go!! I'll be sending up a prayer to the goddess of beautiful boots, and asking her to flex my calves and ankles.

I'll let you know how it goes.....

Friday, September 23, 2016

my home my home my home.

I feel like I'm suffocating. Me, and the people around me. My family. My friends. Who, for the most part, have disappeared. A few remain. The hard core few. They can see I'm still here.

Living with a slow burning destroyer is hard. So hard. I forget myself. Forget who I was. I think that I must be mistaken, if my former self makes itself known. I am unrecognisable to myself. 
I was the girl who went to the gym, who went to yoga and pilates, who grew to love running on the treadmill, she's gone. As is the girl that drove, delivered babies, made silver jewellery, swam and walked. Of all the elements of me, it's walking I miss most of all. Walking meant I could stand. Standing means I can shower on my own. Standing is the starting point of walking. Walking meant so very much to me. It opens up the world. Walking is a springboard. 
I don't know how to feel ok with being like this. With being less. It makes me want to scream out cry until my chest hurts. To rage. To rage. TO RAGE.
But I don't. I keep it all in. Where it festers. And becomes poison. And like acid, it erodes. Until all that's left is a shadow. A shadow of my former self. 

So that was yesterday. Fast forward to midnight and my eyes are still burning. I feel so small and so insignificant. And like people are lining up ready to shove me in a corner. Well I am ready to scratch your bleeding eyes out if you try. I am worth more than that, so take your fucking ugly devices and shove them. They are not designed to make my life better. They are designed to make your life better. In fact, I'd go as far to say that the design thought was missing. They have no place in my HOME. So you can tell yourself that you've done what you can, with the shit that you have, palmed off on some poor spastic, to make your life easier, to make your guilt lighter. I say your, but I mean occupational health. Their occupation was not concerned with my mental health. I felt like I was physically shrinking. 
Yes, I'm unhappy. Yes, I hate myself. I want to turn myself inside out, and rub myself raw. I want to rid myself of this life stealing, slow burning disease. But it's part of who I am, and like my shadow, it will always be here. 

Monday, September 5, 2016


It's Sunday morning, and right now I'm supposed to be getting ready, as friends are coming over for food and a catch up. But my eyes are feeling like they're burning, and my head has the weight of a concrete ball, and is too heavy to lift off my pillow. But as I don't want to force my friends to see my unmade self, I'd better shift.

I shifted and I'm now pleasant smelling, dressed, but with wet hair. My lanky friend always looks lush. No pressure then. Thank fuck I had a shower, did my hair, and put on mascara then. The mascara was dying a clumpy death, and I happily remembered that another friend, is due back from America, ANY TIME SOON, and she always, without fail, brings me back a Mac mascara.

Our friends arrive, and then they leave. I get to keep the memory of their visit. Hugs. Kisses. Bomber jackets. Photos. Chatting. Didgeridoo playing. Or failing to play the didgeridoo. Sharing spit whilst attempting to play the didgeridoo. The didgeridoo hails from Australia.....and this leads to me thinking about Rolf bloody Harris. I shove memories of him OUT of my mind. Nasty nasty little shyte of a man. I mean, what the fuck was he thinking? Actually, I don't want to know what he was thinking. Did he think his victims would NOT be given credibility? Because he had an OBE? A CBE? An MBE? He must have thought he was so firmly rooted in Britian, that nobody would believe any victim that came forward. He must of considered himself UNTOUCHABLE.

So now he's in prison, where I hope he dies. I hope he dies realising that nobody is above the law. And those girls, any girls, or boys, are the only UNTOUCHABLE ones. 
It's Sunday morning, and right now I'm supposed to be getting ready, as friends are coming over for food and a catch up. But my eyes are feeling like they're burning, and my head has the weight of a concrete ball, and is too heavy to lift off my pillow. But as I don't want to force my friends to see my unmade self, I'd better shift.

I shifted and I'm now pleasant smelling, dressed, but with wet hair. My lanky friend always looks lush. No pressure then. Thank fuck I had a shower, did my hair, and put on mascara then. The mascara was dying a clumpy death, and I happily remembered that another friend, is due back from America, ANY TIME SOON, and she always, without fail, brings me back a Mac mascara.

Our friends arrive, and then they leave. I get to keep the memory of their visit. Hugs. Kisses. Bomber jackets. Photos. Chatting. Didgeridoo playing. Or failing to play the didgeridoo. Sharing spit whilst attempting to play the didgeridoo. The didgeridoo hails from Australia.....and this leads to me thinking about Rolf bloody Harris. I shove memories of him OUT of my mind. Nasty nasty little shyte of a man. I mean, what the fuck was he thinking? Actually, I don't want to know what he was thinking. Did he think his victims would NOT be given credibility? Because he had an OBE? A CBE? An MBE? He must have thought he was so firmly rooted in Britian, that nobody would believe any victim that came forward. He must of considered himself UNTOUCHABLE.

So now he's in prison, where I hope he dies. I hope he dies realising that nobody is above the law. And those girls, any girls, or boys, are the only UNTOUCHABLE ones. 

Friday, September 2, 2016

Friends and leaders. Or not. Depending on your view point.

Today has been Thursday, and as such, my friend was here for the day. She comes over every week to help me out, or take me out, and to spend time with The Little Man. As she has been both a nanny  and a nurse, she is well suited to helping us out. Plus, I used to work with her, so I know her work ethic. She is one of a group of us that have been revolving around each other, through work and kids, for the last 20 years. Shit. Is it really that long? Am I really that old? Yes. And yes.

It shouldn't come as a surprise, but it does somehow. I remember laughing, (kindly, of course) at a friend of mine telling me how she'd disagreed with her husband over her age. He'd made her older, by a year I think. Anyway, she wasn't having it, and a calculator got bought into the argument, (for clarification purposes) He was right. I think she cried. When she told me the sorry tale, I'm afraid to admit, that I too cried. With laughter.  However, fast forward a number of years, and I too struggle to remember my age. I know what decade I'm in. It's the units I struggle with. No such problem for my five years younger husband. He just adds five to his age. When he starts to forget his age, we'll both be screwed.

Today I was reading about Trump. Now he's one scary sod, isn't he? Or laughable. Or he would be if people weren't listening and agreeing with him. The wall? WTF?? He's racist, homophobic and misogynistic. And just an all round dick. Saying Mexico will pay for the wall? I'm sure they would if it guaranteed that the arsewipe that is Trump couldn't get in to Mexico. And he lies. He contradicts himself over and over. AAAAAARRRRRGGHHHHH! AMERICA! Please don't let that man be President. I know nothing of Clinton. Mrs that is. And, to be fair, all I know of Mr is that he fancies himself, and that he's not too sure what having 'sexual relations' entails.

Well, I think I'd better go, and read up on Thrilliary. And actually, I find myself more interest in Americas presidential debate, than our (the UKs) PM debate. I need to sort that out. I read up on the candidates before I vote. But that's it. Once the voting is done, and the votes have been counted,  it's too late to read up then. We are stuck with whomever. Marvellous init?

Wednesday, August 31, 2016

Third time lucky......

Do you know what? I've written a blog post twice now, and despite saving them as I go along, they've only bloody disappeared. The fact that I haven't launched my phone out the window, is proof that my patience is improving.

This Saturday, we have a pass to go out to play from our resident daughter. She's saving her pennies, for her girls holiday to Ibiza. We are heading to our friends, who have a new baby. I say new, he is compared to antique me, and he's been hanging around for one year now. So it'll be good to meet him. I would have more babies, but my husband says NO! And as I need his input, so to speak, I guess that's a no then.
There will be another couple there......BREWLIA! I love them dearly, so all in all, it'll be a good evening. I just need to find something to wear. So far, I've settled on flip flops. Well, you've got to start somewhere......
At the moment I can hear The Little Man practicing his negotiating skills re eating dinner in front of the TV. The Good Man isn't budging, which is causing distress, and sees The Little Man escaping to the garden. And now The Little Man is declaring that the dinner he chose is so yucky. The Good Man won that battle and he lives to fight another day/dinner/teeth brushing/bedtime. Endless entertainment, courtesy of our very own pint sized warrior. I hope he maintains his determined streak. Our job is helping him to channel it and to use it for good, and not evil.  

I need a shower as my hair is doing something quite spectacular, and I have toothpaste down one tit. So, I'll love you and leave you.....

Until next time peeps. Xx 

Monday, August 29, 2016

Party number 2......

Yesterday I got the opportunity to sit and think how my life was working out. The fact that the opportunity had come about, because I had slid down to the floor, whilst attempting to transfer from my wheelchair to the bed, was not forgotten, and I awarded myself a fat thumbs down. I love my home, but sitting/lying on the floor really wasn't the way to appreciate it. Two hours later, I'm off the floor, and in bed, which has superior comfort levels to being on the floor.

Yesterday, we also had the little man's very best friend, and his brother and parents call in. The best friend renamed our dog.......Badger to Kennybadger. Ok, fair enough. Believe it or not, Kennybadger becomes quite catchy........

Tomorrow, actually today (it's 3 am)is the little man's birthday. And party number 2. It's a family one tomorrow, as 3 out of 4 sisters couldn't make party number 1. So, they'll be here, along with my mum, bearing chocolate cake. He has chocolate cereal and chocolate milkshake to start the day. So I think that throughout the day,  brushing his teeth will also be a feature of his birthday.

Later that same day (9am) and all the presents have been opened and assembled. My handsome hero husband, and his even more handsome side kick, have gone to get my wheelchair wheel fixed, and to get some icecream. Whilst they're doing that, my plan was to have a shower and get ready, but as I need my wheelchair to do that, I'm back in bed, duvet over my head, and signing out for a couple of hours.

I just hope I don't need the loo.

Enjoy the bank holiday, English peeps, and everyone else, enjoy your Monday.


Wednesday, August 24, 2016


Summer has arrived!! I'm hoping it sticks around for more than a day......but as this is England........
Right! That's enough weather chit chat.

In other boy turns four this weekend! And then starts school a week later. Apparently, there is a glut of August babies starting school this year. He is so ready for know the signs......pushing all the boundaries, acting invincible, ignoring the rules of the house, y know, like NO HITTING. Including hitting the dog.......'he WILL bite you, and it'll be your fault for hurting him!' Actually, Badger would UNLIKELY (never say never) bite, but don't tell the little man that. Badger prefers to retreat out of the way. Usually to my bed, or down the side of my bed.

So, today The Good Man's uncle arrived to stay for five days. He is a lovely man, with his south London accent, and garden knowledge. There are plenty of little excursions we can take him on around here, mostly revolving around walks and tea rooms, I realised today.....he'll be driving home feeling a bit fatter.

We have people popping in over the weekend, and a little party Saturday lunchtime. Thing is, when you have a big family, like I do, a get together with EVERYONE, is almost impossible. Everybody being free at the same time? Well, it just doesn't happen. The little man's best friends will be here, and luckily all the boys will kind of entertain themselves. With help from a football, scooters and water pistols. Dread to think what they will look like, come home time. Maybe we'll just pop to the park with ice creams. Yeah, that sounds more civilised.

I'll let you know how it goes, how many days we have an open house for, for different people to drop in.

Ugh! I'm back again, unable to sleep. Getting dive bombed by some bug that got stuck in my hair didn't help. I've done a bit of Internet browsing, and I can say, the fashion world has gone a bit nuts. Looking at bikinis, the briefs are either so tiny, that you better not have pubic hair. OR, the briefs are anything but, and you could get a full on 70's bush in them. And what's with all the 'caged' footwear, with heels of every height? And you can even get tassels on them. I'm sticking to flip flops and converse.

Night. See you tomorrow. Xx

Friday, August 19, 2016

Still paying for it.......

Ok, so it's late Wednesday as I write this, and that's four whole days after the wedding. I know I said in my last blog that there's both bad and good knackered, and whilst this started out as good knackered, it's morphed into bad. There's only so much I can take of feeling floored/flawed (take your pick.......both words work for me). And to really rub rock salt hard into the wounds, we had friends round tonight. Tonight's knackeredness comes courtesy of a shower I had before our friends arrived. I should have forgotten about having a shower, and greeted them with matted hair and a pungent aroma, and been the happy hostess. But no. I was in bed. Put there physically by the good man. I love my bed, and my whole bedroom, thank heavens, as we spend so much time together. But my love for my bedroom, and everything in it, may come under threat, if we spend too much time together.
Still, I'm going out tomorrow WHOOP WHOOP!! To wheelchair services. Oh :( Not exactly a thrilling trip. But saying that, I'm forever grateful that services like this exist. Well, saying that, where I used to live, this service was severely lacking. The woman that phoned me from there, sounded pissed off from the start. I think she may have been playing Spastic Top Trumps with her colleagues, and when I said I could sit up unaided, I think she lost her card to a rival. I did remind her that I couldn't walk and that was the reason for my need for a wheelchair. Anyway, she gave me an appointment MONTHS away, and in that time I'd sourced a wheelchair supplier, visited them, put in my order, waited for it to be made, went and collected it. MONTHS before my appointment with them. So yeah, this area wins hands down AGAIN!
Damn it! Handsome hero husband said it's next week we go to wheelchair I've gone from feeling a bit grumpy, that I don't get to go out much, except for medical stuff, to NOOOOOOOO!! Not another week! Well, that confusion has got me looking forward to it at least!

My friend is here tomorrow. Glad I don't have to cancel on her, due to ⬆️. The question is.......what shall we do? And where shall we go?! Turns out we just chatted and drank tea......

It's Friday now, and it is pouring down! As a wheelchair user, this is BAD NEWS, on several fronts...

1. As both hands are busy propelling myself, I can't hold a brolly.

2. The metal bit on the wheels that I propel myself by, is also wet, and dead slippy.

3. My lap gets SOAKED!

So yeah, rain and wheelchairs do not go together at all well. I also received some flip flops in the post today, and they also don't go with the weather either. But they, and converse, continue to be my footwear of choice, whatever the weather, until winter hits. They last for YEARS! Especially when you don't do any walking in them!

Right. I'm going now, as I've turned into the most boring person, chatting about the weather. 

Sunday, August 14, 2016

Can't stop the feeling.......

Thanks to Badger dog, my lounge window is now clean, as I had to clean his dog snot off it. Nice. To be fair to him, he does a stirling job protecting us all from the neighbourhood cats. A dodgy start to what promises to be a great weekend. Especially if you also include a six hour trip to the Lake District. The traffic was CRAZY! But anyway, we're here now at centre parcs, and it's lush. Things that have been adapted or made disabled friendly can often look a bit 'budget' with it often screaming in your face. It's like all the design effort has been used up, and there's only the scrag ends left, that no one else wants. But not here. I would happily live here. It's just so easy. Open plan and hard floors make it so easy to get around. For both me and The Little Man, who's taken to riding his scooter around indoors.

Anyway, the reason for our trip, was because of a family wedding. I love big family gatherings.......having everyone all in one place is just fantastic. My family alone measures 8 plus 3 of the girls boyfriends (which includes 1 fiancé, 1 co-habiter and 1 university, rarely here, travelling boy.)

Secret plans and clever tricks (thanks Mr Dahl) were carried out by all the guests, to surprise the bride and groom with a flash mob dance. I gave it my best shot, but really, being in a wheelchair meant I was just waving my arms around with the odd clap. The music was Justin Timberlake's Can't Stop The Feeling and will forever more be burnt into my brain. I'll probably be found aged 80, still waving my arms around, whenever I'm in a the supermarket, in a hospital, at an airport.
Congratulations to my sister for organising us all. It really was awesome!

I think my soul is carrying around two buckets. One bucket is where I get to dump all the crap and unhappy feelings. The other bucket is for all the good and happy stuff. Throughout yesterday, my happy bucket received a serious amount of the good stuff. Today I'm feeling a bit broken. But there's bad broken and happy broken. It's definitely the latter. I just need a sleep, and that will reset me.

Before I go, I'll just say.....
Lauren and Tom, An excellent start to married life, and I hope it continues to be excellent, now and always! Big love to you both! Xx

Sunday, August 7, 2016

Sunny days......

It's Friday morning and the boys are out to play. When they left I was having 1:1 time, with my bed. But then, I managed to stir myself enough to leave my pit. I put washing on, sort the dishes, had breakfast, and other various bits of household management. As I'm crawling back into The Greatest Bed There Ever Was, I notice what looks like blotches of tomato sauce on my bedding. What? How? Why AND Who? But realising I'm dead on my feet, I decide I can live/sleep with it, and I add stripping the bed to my list of things to do in part two of my day.
And that's how I generally get through my day, when work or nursery comes calling for my other housemates/family members. Crushing loneliness is easier to handle, if the day is broken up into chewable, manageable pieces.

And now we are done and dusted with Saturday, a sunny day spent at no.3's house. An impromptu bar-b-cue was had, and plant buying, and planting plans made. But not without my now least favourite child saying, 'oh bless you mum, you've got to that age!' And this was because I knew the names of 3 plants, and suggested we go to a garden centre, so we can plant up a vacant border. And I pulled up a dead plant, and saved a crocosmia (?spelling) from being choked to death by bind weed. Ah now I write down, I can see she had a point....

And, as if I needed further confirmation that I've reached that age......OLD.....we get home to find a visitor. That is, a friend of no4's, who's now at uni, BUT I'VE KNOWN YOU SINCE YOU WERE 4!!
Still, I had it coming I suppose. I delivered a baby once, and said in my head but accidentally out loud, 'when this baby's my age, I'll be 72. A passing midwife heard me, and said, 'And I'll be dead.'

So yeah, fast forward to Sunday.....eleven people in our house, and one dog. Please don't tell the Good Man that I said he was right, we need not have tidied before people was not worth it! Still, all quiet now, order restored. Water fights over. Mountains of dishes done.

Anyhoo......back to old lady thinking......I seriously cannot wait to get the turf laid! And the border planted, and the patio laid! The house is done, and that will complete the garden. Job done.

And I can't wait!!

Wednesday, July 27, 2016

Fat to Fit? Here's hoping......

Anyway.......someone, an anonymous someone, sent me a beautiful bouquet! And as they are anonymous, I've been unable to say thank you personally. I asked the florist to pass on my thanks, which is better than nothing, but still, WHO ARE YOU? So, just in case the mystery person reads my words, I'll say a BIG THANK YOU!! THEY ARE SO BEAUTIFUL!! You made me very confused, but happy. A weird combination of emotions.

The weather continues to be's all water fights and ice creams here. Did you see about water fight craziness in a London's Hyde Park? The police had to be called. Ours aren't THAT enthusiastic, but I can see how they'd get out of hand. Which the Hyde Park water fight did. No one gets stabbed or arrested at our water fights.

Our garden continues to not be beautiful. And another day has been spent watching the good man chip away. IT WILL be lovely.....just give us a minute. It's not vast, by any means, and that's ok. Better than ok really. The smaller the dust bowl the better at this stage.
And still, the little man finds that clothes are surplus to his needs. I hope this trend doesn't carry on when he starts school. Still, at least he'll be able to get undressed for P.E on his own.

I tell you something for nothing. I have two photos of olden days me, up in the bedroom (for inspiration)and whilst I didn't realise it at the time, my figure was amazing. And it was post three children. So, to olden days me, I say.......don't moan, as long as it works, it's fine. And if your body works there will always be something you can do. Even me. My arms work, so I could opt to use the wheelchair as much as possible. Sometimes I use the scooter when I don't really need to. And that's just lazy. And sometimes I use the wheelchair when the wise choice would've been the scooter, and I nearly kill my husband as I need his help to get up a steep hill. And sometimes we are just thick. Car to me, not me to car.

Welcome to operation Fat to Fit.

Sunday, July 24, 2016


So, joy of joys, it's Sunday, and so far this last week, I haven't had to go to hospital! Hurrah! I've ordered garden furniture, and put the shout out for turfing to be done........the garden is  a bit like a dust bowl at the moment......
The bruise on the back of my hand has almost vanished and my feet are  SLOWLY, so bloody slowly, retuning to a normal size! For one horrific moment, I thought I was morphing into a lady with a housecoat, curlers and slippers. Some things you just can't style out.
It's 7pm and the boys are in bed, and I am too. The Good Man is out with his/my/our dog. He's really caught the sun (that'll be the plastic Italian in him ) and he looks really quite nice. Don't mind if I do......

At some point, we will have a house warming party, but preferably when the garden has been transformed from a dusty hell hole, into a thing of beauty, with grass, plants and some seating. I really can't wait!

Within the last wee while, it's all gone a bit mental in Europe.....Paris, Nice, a machete attack, Munich. Made all the more mental, when no one can answer 'Why?' People may have answers for WHY, but nothing, anyone can say, will make me say, oh, right, yeah, that makes sense. Because it doesn't make sense. And never will. We need to treat ourselves well, and other people too. Not always easy, especially if someone has been an absolute dick. We can but try, and sometimes that's all you've got. And it's better than nothing.

So, yeah, this comes as plea, to treat those around you well. And if someone doesn't treat you well, leave. If someone treats you badly, they will continue to do so, until you leave. What are you waiting for??

People and planting. They both need your time, and your care, to be the best they can be. Simple, really. 

Thursday, July 21, 2016

The drugs do work. And I'm feeling the love......

Today is my last dose of intravenous steroids. I can already feel them working in little's easier to transfer from, and into my wheelchair, my face is a startling red and SO warm, and I went to the supermarket at something like 9 o clock last night on my scooter, and dropped flowers off to a friend. Which sounds a bit more normal than what I actually did. A while ago my scooter sank on her gravel driveway, and not wishing to repeat that bit of strandedness, I just chucked the roses onto her driveway, and text her that there was something I'd left/chucked just inside her gate. Anyway, I received a message of thanks and confirmation that they had survived and were now sitting pretty.

And it's 2.30am, and sleep evades me. A fact that will no doubt thrill me, when I'm up at 7am. I need my beauty sleep these days, and 4 hours doesn't cut it.

The weather here has been glorious, so much so that the little man strips off as soon as he's home. He can't get enough of the outside tap and a bucket, and standing in it. I heard the Good Man discussing the early mathematics of sinking and floating, more than and less than, and estimating how many cups will be needed to fill up Badgers water bowl. So it was not surprising that yesterday I read in the little mans report from nursery that he's ahead in maths. Which is a bit of a relief as he will be four plus a couple of days when he starts school this year. But realistically, he'll probably handle it better than his dad and I. Actually, just his dad. I'm slightly more hardcore.

I can't express how happy I am that today the cannula will be removed from the back of my hand. I look like that funny twat, Keith Lemon, with it all bandaged up. And as I self proppel myself, it gets really grubby. So yeah, small price to pay for feeling better, but I won't miss it.

As is the way, you generally get chatting with other people at steroid days, and I left with a heavier friend quota. I had time to kill whilst I waited for the good man to do his appointments. Starbucks provided me with a caramel frappachino, whsmiths provided me with books, and another shop provided me with presents for the little mans key worker at nursery.

I realise that I haven't shared any photos for ages, and now I can't remember how to do it. I am so frustrating! I wanted to share a photo of me and my youngest girl, who has appointed herself as my personal entertainments officer. She wants us to do something together everyday. And we have! Although not today. But through the medium that is babysitting, she enabled me to go to the shop. This also enabled her to give me a list of acceptable gifts, that she would be happy to receive. Any clothing. Hippyish style. I forgot the hippyish bit, and came back with a black denim mini skirt. The jury is still out on if it will be accepted. Or exchanged.

Oh well. Can't win them all.

But scrap that, because I do feel like a winner, due to a lovely lovely bouquet of flowers I received today, complete with note, but NO NAME!!!! So, if the sender also reads my words, to you I send a HUGE HUG, BIG LOVE, and as I could work my way through a list of friends that may be guilty, it was pointed out that I had a lot of friends :) I may have lost some, but I've gained more, and existing ones are deeper under my skin. So, thank you for making me realise that, and thank you once again. I LOVE THEM, you chose excellently❤️😍

Monday, July 18, 2016

Hands off the NHS! Without it, I'd be screwed!

At last the sun has arrived!! Yesterday was spent at a park to celebrate the birthday of the newest family member. Three hours in the sun and I have a t shirt tan to be proud of. AND, due to the curse of sitting down all the time, brown thighs, but just the front/top.

I have also had a couple of stays in hospital. I went by ambulance both times, and one of these trips I had no recollection of. So that was crazy. As was one patient shooting another in A&E. Who takes a gun with them to A&E?? Anyway, armed police were milling around, and their presence was comforting/easy on the eye. I now also have to have an MMR booster injection, as one person in A&E had measles.

Luckily, both stays were brief, so I can turn my attention to the garden. It looks a bit shite at the moment, but it won't take too long to get it round. Easy for me to say this, as I won't be the one laying slabs and planting......

Also, daughter number four, has made it her mission to do something with me every day. Yesterday was day four, and so far we've cooked dinner together, sat in the garden, been to the park and to the shop. And she's painted my nails too! I always feel a bit more done/ready for anything, when my nails are done. I know it's silly, but there's a reason why it's a consistently growing industry!

I've just had a call from the hospital saying I NEEEEED to go in for three days on the trot, for IV steroids, as MRI shows I'm relapsing.....weird one this. It's good to have the fact I feel shite validated, but it also makes me mad.'Oh will you just please fuck off MS? I am not your play ground!'

But at least it gives the hospital a chance to shine, and shine it did!

Tuesday, June 14, 2016

Cake, the river and memories.

This weekend I went to Stratford upon Avon, with a couple of friends. The weather was beautiful, as was the cake. We sat by the river in the sun, as we watched a group of girls trying to master rowing. They probably had other talents, at least I hope so, as rowing was not one of them. When they finally, FINALLY got going straight, in a semi controlled way, they got cheers and claps from our side of the river, and the other side of the river, AND a group of people playing cricket. The girls accepted this attention with good grace, as they rowed off, hopefully with a memory of their glory to draw on in their latter years.
Spending time on making memories, is invaluable. In your future, it will be the memories that you made in your lifetime, that will keep you warm. I know a piece of cake will transport me back to sunny Stratford…….

I know that if I go out to play, I'm going to pay for it MS wise. Here we are three days later, and I'm still paying for it. But what's the alternative? Stay in? Well, I'll still feel a bit ugh, y'know, a lighter shade of shyte, but I won't make memories So, no. No thanks. Todays deposit in the memory bank, is the friend round to help build a shed, the builders continuing the path (my escape route), writing to you lot, as the little man plays with his Lego, whilst watching TV. And eating an ice lolly. I think he got his ability to multi task from me.

I really cannot wait for my escape route to be finished! I haven't been able to get out on my own for about 4 years now, so whilst I probably won't go anywhere exotic or wild, WHO CARES?? Supermarket? Park? A friends house? Meeting people at the pub? It's ability to get out that matters……and bloody hell! Have I missed it?

Yes! Yes, I have!

Monday, June 6, 2016

Support and scaffolding.

Today I took my boobs shopping for some much needed support. I found some really pretty scaffolding not too far from home, which suited me, as when it comes to shopping, I like to go in, get it, get out. I cannot be bothered with traipsing around shop after shop, whilst my soul slowly dies. I say this, knowing full well that a bathroom cabinet waits for me in the shopping hellhole that is Ikea. I may stab myself in the face by the time I reach the beds. But at least I'll die in moderately priced comfort. And that will be the full stop to the wheelchair friendly extension. Internally anyway. The garden still looks like a bit of a shit hole. But it won't take too long to sort it out. She says, hoping that she learnt her lesson, the last time she spent a sunny day in the garden, and burnt one leg. Yep. That's right. One. One leg.
The only minus to living here, is the twat that likes to thrash the hell out of their moped and it's hairdryer engine. I dream of hiding behind a car with one of those stinger things. Do you reckon you can get them on Amazon? You can get pretty much anything on Amazon. Oh I'm going to have to look now aren't I? Back in a bit......
No, you can't. The good man, and daughter no 3 thought that the police wouldn't allow it. Fair enough.

I tell you what's not fair, enough or otherwise, and that is that it's 4.30am and I've not had any sleep yet. Why? WHY? Those bloody chickens up the road will be starting up again soon. And I won't want to sleep tomorrow as The Little Man has a day off nursery.
And before I know it he'll have started school. And I'll miss him. I've never had just one child before. Well, I have, but the 6 minutes between twin 1 and twin 2 don't really count in the great game of parenting.

I was lying down for a start.

Tuesday, May 31, 2016

Wonky bird.

I had a lot of years walking, and some of those years were in high heels, so I would think, hope, that all that experience would count for something. No? Earlier on I was thinking, 'You know what, I think I could manage a few steps. I mean, really, how hard can it be? Babies do it.' I had, at this point forgotten telling a friend about my slump down a wall and how it took me half an hour to get back up. And that was with help. But then my mind kicked in to remind me that I was being a bit of a dick. So that was nice.

We all have that inner voice, that issues warnings, and it's down to us to listen to it. But we also have an inner voice that whispers encouragement. It's down to us to hear it, and to work out if those whisperings are friend or foe. See above⬆️
In the past, I referred to the early days, pre diagnosis days, as my body whispering to me, that all was not well. A numb face. ALWAYS choosing flats over heels. I didn't listen. Well, not until I gave it no choice but to scream at me. Scream it did, in the form of double vision, numbness all the way from feet to waist, and vomiting, with little warning, so sometimes I was sick in a carrier bag, and sometimes on myself. Just anywhere really. These moments were not my finest moments. Loss of balance when walking, resulted in me bouncing off walls, misjudging doorways (bruised shoulders). Dealing with all this was no walk in the park, especially as I didn't know, at that point, what was going on. And I was training to be a midwife. And, my previous marriage was breaking down like wet sand under my feet . So yeah, there was an awful lot for my inner voice to scream about.
Still, no matter, it all came good. I am now firmly wedged in my new life. The girls are all good, their lives are happy lives. I'm good. A wonky bird, but a happy bird.

Some friends of ours, gave me a gift. A beautiful gift of a wonky bird. I do love birds. Birds symbolise freedom to me. If only I could fly. Can you imagine? How awesome would that be?
In the past, my childhood past, to fly would always be the superhero power that I would choose to have. You can keep your invisibility, X ray vision, and Hulk smash shizzle.
Another friend came round today wearing a beautiful long top/smock that she'd made, and she looked so good! There's nothing that she doesn't know, and she's kind.....always kind. And always brings cake round. So, she's always welcome here.....with or without a cake.

Though preferably with.

Saturday, May 28, 2016

Bruce Wayne anyone??

When I awoke, the house was quiet.......odd, as there should be the noise of 3 boys, big, and little. Consulting my phone, I see that they've gone off to a car boot. I was thinking in halves, one half thinking, 'ooohhhh.....treasure', and the other half thinking/dreading 'I hope they don't bring back other people's crap.' I shouldn't have worried. The Good Man came back empty handed, The Little Man was also empty handed, as so much on display confused him, whilst The Bigger Boy came back with a toy figure, with half a leg missing. Which is ok, because ALL disabilities are welcome here. So whilst they were out I boringly made the most of my time, doing washing, and by making the kitchen sing with happiness, at it's tidied and cleaned surfaces.
And now I find myself turning down an invite to watch Batman, as I need sleep AGAIN! Bloody boring, but needs must and all that, got friends round for dinner tonight, and I have had to cancel once already......
Thanks to Bruce Wayne/Batman, the boys....ALL the boys, are entertained, and I am dozily writing to you lot, and thinking about what to wear tonight.

Several hours later....turns out I didn't need to worry about what to wear, as I'm going nowhere. It's just me, myself and I. And two sleeping boys.. MS has decided to give me a right good slapping. Doesn't it EVER get bored? And to think, that's it.....this is my companion FOREVER, well it just fucks me off no end. The world's worst abusive relationship.

I might go crazy later......a cup of tea, some toast and TV. WILD.
Is this my life? If so, I don't want it. I want my old life back. I want the old me back. I don't like this new me. She's a bit shit.

Right! That's enough mooching.......GET UP you miserable cow. There's tea to be drank and toast to be eaten! And god knows what to watch.....but NOTHING featuring Bruce Wayne. 

Friday, May 20, 2016

Signs of life.

It's three o clock in the morning and despite tiredness that makes me feel like my eyeballs are burning, I can't seem to switch off. I feel like a kid at Christmas. I think what's keeping me awake, is the very real, long time coming, DOWNSTAIRS BEDROOM AND BATHROOM!! I mean, AAAARRRRGGHHHHH!!! So bloody happy!! I can just about get myself down the stairs, so come moving day, I get to sit, watch, point, and make tea, provide snacks and keep little people entertained, and out the way, for fear of getting in the way of a man with a wardrobe. I haven't been able to get downstairs for a couple of days, and I'm assured, I wouldn't want to.....the washing machine, the tumble dryer, the cooker and the fridge freezer are all currently in the dining area......with a table, four chairs, a sofa and a sideboard/cupboardy/blackboard it's pretty cozy in there. But I MUST get downstairs this weekend!

Daughter no4 will inherit our room, and she's twitching like mad for us to get out, so she can get in. Shame then that I forgot to order 2 new beds.......I see a desperate run to IKEA in my very near future......I need to remedy the problem. And hope mini diam bars have the power of forgiveness in their thick chocolate coating.....?? Lift anyone? Preferably in a large vehicle?? Sod it, no I'm getting it delivered. It's £35 but we'd probably spend that on diam bars, biscuits and other random crap, that I would convince myself would be really quite handy, and fuel for god knows how many cars, that we'd still probably struggle to get everything in. We would become that family, that you always see in the car park, trying to get everything in a too small car for the task. And then sitting, squashed, for the journey home, with a bed frame balancing on your head. I mean, you never see, a person EVER leave IKEA with one, ONE, of their paper bags full of stuff, do you? I think all that MDF must go to your head....

Now it's gone four, and the bloody chickens up the road are awake. And they really don't see why they should be the only ones up. They sound like they're doing their best to wake everyone in a two mile radius. And now the garden birds* are joining in. It's still dark, so ssshhhh please. You sound lovely and all that, but really?? Shut. Up.

They're still going for it now, although as it's nearly lunchtime, they're having to compete with traffic and people noise. Still managing to make themselves heard though. Small, but mighty.

The kitchen and bedroom floor is getting finished today, so thankfully we will hopefully get things back in their normal place later. Right then, lazy moo here, needs a shower, and to get dressed. First things first though....I need a bit more sleep. UGH....... I could sleep my life away. In fact, I think I am sleeping it away. Fatigue really does take the piss. No matter how much I sleep, I'm still tired. Always tired. I'm hoping that a bit more sleep will help to extinguish day two of my flaming eyeballs. And maybe, now I no longer have to climb a mountain to go upstairs to bed, I will have a little more energy. I used to go a bit nuts at my girls, if they ever had a red bull, you know, that sickly syrup energy drink, but now I'm thinking, maybe I should get some. Maybe not. I don't need to give the girls any reason to turn the tables back on me!
They would LOVE that though. Should I deny them the joy of bollocking me? With regards to energy drinks, YES. And anyway, they have enough to be going on with.........artwork, framed photos, books, drums,  guitar, flutes, more books and oh, that does sound quite a bit. Never mind. I LOVE everything! I think the girls just dread sifting through everything, when we're dead. But you know what? One of my girls was really quite insistent on me having a clear out, then she said she'd come round and have some of the stuff that I was clearing out! Y'what now? You want some of my stuff? But you said it was crap!

Bugger off darling. I prefer to think of my 'crap' as signs of life.

*I have a brilliant book.....Our Garden Birds by Matt Sewell. 

Sunday, May 15, 2016

In the thick of it.......

Due to a family get together yesterday, I now have a sunburnt face. I thought, and hoped, that it would look better after a nights sleep. But no. As I still look shiny and red, less so, but still.
So, back to yesterday. I made it my job to stress myself out, by doing a head count over and over. The fact that I was counting the heads of the  family males aged 3 to 39, was not lost on me. The ladies, from babies to me, always knew where they were, and they remained in a pack. Except from me. I was always on the edge, counting heads. That last sentence makes me sound like a crazed serial killer, and whilst a family outing can drive you to madness, I've always managed to reign in my inner psycho. 

We went to the cafe whilst we were there, and had one of the big tables that overlooked a huge lake. There was a shop with a dangerous combination of beautiful, breakable items, and things that kids go nuts for. You could also buy duck food, so we did. This was another time where I was watching from a distance, as a high concrete sleeper prevented me from joining my family at the waters edge. So it's lucky that I'm happy to be watching. But, to be honest, I didn't really expect to be excluded at a family park. Because if I can't do it, pushchairs can't either. Anyway......back to the park we go. It's quieter now, so my job of head counting is easier. We split up to go to our respective homes, via different jobs to be done. For us.....shoe buying. Joy of bloody joys. We tried on an incredible amount of shoes, including some Star Wars efforts in 3 sizes too big. But this did provide the 6 year old a chance to exercise his ability at verbal persuasion. And me the chance to exercise my ability to deliver a firm, don't mess with me, yes I know they're your favourite, but they don't fit so NO. 

The excitement of yesterday has of course meant that I need to run command centre from my pit, as I'm good for nothing today. Except bedtime stories that is. I really can't wait to move into my bedroom downstairs. No matter how bad I get, I'll still be in the thick of family life, and that has its own healing powers. 

There's only a week to go until that win win situation.

Friday, May 13, 2016

Nearly there!!

I really thought I was done with getting new symptoms, but no. This morning I woke up to my left hand feeling like a fizzy glass of coke or appletiser......whichever floats your boat, but do you get what I mean? Feeling like it's fizzing. As symptoms go this is not the worst......quite pleasant actually.

So last night I met up with a friend that I've known since before MS. She treats me the same as she's always done, which I know is hard for people to do. Because I'm not the same PHYSICALLY, but MENTALLY, I am. And the physical can be all people see, and so they take their lead from that, which is ok. But it's not ok to forget the person that I am. Everybody changes, and we generally roll with the punches that that delivers. Hard, I know, but just don't forget who I am. I am not my wheelchair. Don't let that be all you see. Especially as last night with my friend who led to a bit of internet shopping, and I have a bit, my first ever bit, of Bobbi Brown coming my way. So please notice my slightly rosy cheeks, and kissable lips. Although the lips remain for The Good Man ONLY!!

So, extension update.....the bathroom is done! The bedroom just needs the flooring, which will be done next week. So next weekend is the moving in and I can't wait!! I pity the girls boyfriends as they've been roped in to help. The garden is another story. It's been a building site for a couple of months, and when it's been cleared, I think it'll need a bit of love. That's where my green fingered sister comes in handy. There's a big concrete sectional shed to get rid off. Despite it's usefulness, it's got to go, as it's hideous. Garages and sheds attract crap that really should be binned. Ask the green fingered sister, who has a double garage full with her husband's 'treasure.'

In other news.........I have a private appointment with a neurologist to see if I can be referred to Kings hospital for HSCT. This treatment can stabilise your disease progression, and in some cases, it reverses the disease. Some people have wheeled themselves in, and 3 weeks later have walked out. A bit wobbly, and sometimes with a stick or crutch, but still, WALKING! If there's one thing I miss, it's walking.

The world is set up for walking people. From putting a step or two here, and displaying things high and too close together for me to reach or negotiate, ARRRRGGGHHH! I can't stand up unaided let alone walk. So yeah, I miss walking.

So the extension is very nearly done, and I will be able to exit and enter the house ON MY OWN!!!! Did I already say that? If so, apologies, but I'm so bloody excited!!!

I'll love you and leave you, as I have my own crap to sort out, and I'm not bunging it in the delightful shed. I will, however, make use of the skip in the front garden. An equally delightful feature as the shed, but I'll make use of it before it goes. Thinking about it, the skip's presence indicates that there's more work to be done, so when it leaves, carrying some of my crap, it'll be because we are done! And I can't wait for that moment!

Monday, May 9, 2016

Be your own hero/heroine.

Today has been one of those days. Y'know....the sort that drags......but then, suddenly, the hours pass, and you forget about being stuck in the shower, and having to make your escape by lassoing a foot. Which, by the way, you congratulate yourself for. 
The builders are still working their magic and beautiful magic it is too. Nearly nearly all done. 
It's really hot here, but I'm cocooned from the sun's glare, as I'm stuck in the shower and upstairs in my moderately insulated home. 
My husband returns from working outside all day with a glow that won't let him feel the benefit of being inside. My little man delivers an ice cream to me, and I'm suddenly struck by how grown up he looks. Which inspires me to get back to the task of thinking/inquiring about his 4th birthday. 
I'm finally feeling the benefit of the pain killers I took earlier, to lessen the feeling of my brain trying to escape through a temple. My left temple, you understand, and not a place of worship. Although, that does sound like a 1950's sci fri/horror film. I could be the heroine, in a twin set and pearls, clutching my face in a wide eyed horror. 
So, anyway, back in the real world, where I'm still the heroine of my own story, escaping one shower at a time. 
I will live to roll again!

Wednesday, April 13, 2016

Happy days are here again! Well, nearly.

Don't get me lots of ways I feel blessed......but in other ways....not so much blessed, and more than a bit fucked off. 
And I know, I KNOW which one of those two I feed, will gain in strength. But, bloody hell, can I please be allowed to want to scream? I mean, talk about picking your moments......I am on the cusp of everything getting so much easier.....a downstairs bedroom and shower room, access sorting so I can independently come and go.......and what do I do?? I become a miserable sod. Why do I want to scream? Because sometimes I feel like a child. Being driven. Help to get dressed. Helped to get undressed and into pjs. Helped into and out of the shower.  Not picking my own bedtime because I need help to get up the stairs. Being stuck upstairs, because I'm in a coma and everybody goes to work ( The Good Man has hoovered around me and I still don't wake)......I can get myself downstairs by bumping down on my bottom, but I can't get the wheelchair downstairs. When that happens, I'm stuck upstairs till someone comes home. 
You know how kids really look forward to Christmas, but it's Christmas Eve when they can't sleep? Yeah, that's easier life is just around the corner, but I'm losing my shit, and AAAARRRRGGHHHHH!!!

I think I may have a problem. I think I don't function too well when there's nothing to fight for. And you know, to just enjoy being. 
There are so many things that I'm looking forward to this year....decorating bedrooms and bathrooms......a family wedding....a mini is just ticking along bloody nicely.

Until about 8 months ago, it was all just fight, fight, FIGHT. And had been for years. So yeah, I guess I need to learn to drop my guard, appreciate and chill. Or as The Good Man and I refer to this......Taking Care of The Everyday Glue. Cause that's what holds us together. It's not the big, grand gestures, although they are brilliant, but worth so much less without the everyday glue. Do you know what I mean by everyday glue? It's the little things that people do, just because they love you....the first cup of tea of the day, that's just magically there when you wake up/come round from a coma, picking up the dog poo, doing the dishes, pumping up the tyres of your wheelchair, arranging nights out.

So, tomorrow, my friend is here ALL DAY, and we are going out to play(friendship glue).At least until the little man comes home from a sleepover at his big sister's. He was SO excited, he only just managed to say bye, before he ran down the street. And I'm happy with that. And The Good Man gets to have a much needed lie in......and he is happy with that!

And, it's starting to get sunny!!

Sunday, April 3, 2016

Count your blessings…

Annoyingly, I'd just finished writing a post, and on clicking preview, it disappeared, as annoying as it was, I didn't break down in tears like I did in the early days. Hhhhmmmmm…progress??

Right, so, back to the beginning…last week The Good Man and I went to Wagamamas, to celebrate his birthday. We parked the car, and next to us, was a homeless man. He was sat on a large bit of cardboard, and wrapped in a blanket. He looked to be in his thirties. How does this happen to people? HOW? I know the contributing factors are things like physical, emotional and sexual abuse, loss of a job, or a relationship break down or illegal eviction. There are some people that think, and have said to me, 'Oh no, it's because they're on drugs. Or drink. '

A look at the website for the charity SHELTER, tells me, that they had, and responded to 4 million requests for help last year. Can you imagine? So that's one charity, and in their list of contributing factors, they don't mention drugs or alcohol.

So, against the 'advice' of misinformed people, we chatted to the man for 5 minutes, gave him some money to get a hot drink. He went to a cafe nearby and we went for our meal.

Later when we got home, it was really raining. Lying in bed, and listening to our home take a really loud and sustained beating from the weather, I thought (and not for the first time) 'Thank fuck I'm not homeless.' and I sent up a prayer to the Goddess Fortuna. On researching a bit about Goddesses, I came across Isis. She is the Goddess of magic, and the giver of life, symbolising femininity, and empowerment. Which made me think that history is repeating itself. The Nazis took the swastika symbol, and made it their own. It now represents the horror of the second world war, ethnic cleansing, concentration camps and death. Initially, it was a symbol used by the peace loving religion, like Buddhism and it symbolised good fortune and well-being.

So, it's interesting that both Isis and Nazis started out with taking something that wasn't theirs to take, and carried on taking. The Nazis of the second world war were stopped. But this was not in time to prevent the deaths of millions of people. MILLIONS. Isis has also spread panic and fear throughout the western world. When will they be stopped?